Also known as painful intercourse syndrome, vulvodynia is an often-oversimplified diagnosis for a very complicated and debilitating syndrome. Pudendal neuralgia is inflammation of the pudendal nerve. This condition causes burning or stabbing pain in the genitals, urethra or anus. The pain often gets worse over the course of a day and is exacerbated by sitting. Both conditions make sex incredibly painful.
Sex should not cause you persistent pain. It can get better. You’re not alone.

January 25, 2008

Vulvo-Denial

I just want to be fixed. I keep grasping at straws. With every new treatment, I tell myself, “This is going to be the one.”

After the second round of injections failed, I became very disheartened. I wanted more information and my boyfriend helped me find it. He’s a master of searching the internet. He found an extremely comprehensive forum for people with pudendal nerve damage.

They discuss everything! At first, I found this site encouraging. There’s so much I can learn from people who have posted. But the forum also gave me a glimpse into the lives and daily struggles of these people. It was grim.

Some of the contributors have been living with nerve pain for many, many years. Some longer than I’ve alive. A lifetime of pain. Oh my God! That’s not how I want my life to be. One woman posted that after the pudendal nerve decompression surgery, that I so desperately wanted, she can now sit for 2 to 4 hours, 6 with breaks. That’s her best! I want this surgery to put an end to my pain, not slightly modify it. I had such foolish, high hopes. Now I’m terribly disillusioned.

As I reflected on my own pain, I realized that this is going to be with me for the rest of my life. I am going to be in chronic pain for the rest of my life.

I’ve tried, since my pain began, to lead a normal life. I’ve done everything I could to ignore my pain and maintain appearances. I want to be able to have sex whenever the moment arises, but I can’t. I’ve adjusted to taking a day or two off (sometimes weeks) for recovery. That’s ok with me. There are plenty of other things I can be doing that are almost just as fun. I refuse to let my vulvodynia interfere with my relationship.

It hurts me so much to admit that I am completely unable to prevent vulvodynia from interfering with my job. Like so many other people on that forum, I have to admit to myself that I can’t sit at my desk at work for 8 hours like everyone else.

When I wake up in the morning, I generally don’t have pain. In my sleep, I put no pressure on my pudendal nerve. Within an hour of getting to work, a persistent burning begins and some days I’m still feeling the same pain when I go to bed. I’ve tried cushions and doughnuts, but nothing has helped.

I realized this week that I just can’t sit like a normal person.

This might sound stupid, but to me, not being able to sit for extended periods of time at work means I have to constantly be thinking about my vulvodynia. I just want to ignore it, but I can’t. I have to accommodate it. Essentially, I feel like my vulvodynia is taking over my life.

I feel so defeated. I don’t want this life. I’m only 25. I can’t imagine a lifetime of pain. A lifetime of special accommodations. I don’t want to draw attention to myself. I don’t want people to look at me and think there’s something wrong. I just want to be like everyone else. But I can’t.

The question is, “Now what?” I have no idea. I have a desk job. Right now, I’ve got my computer and keyboard propped up on boxes of mailing envelopes and my mouse is on a hardback book. It’s totally ghetto. I’ve been standing for most of the day and I’m still in pain.

I don’t know how else I can accommodate this problem. I feel like I am back to square one. I need to sit down with my doctor and access my situation. I need a new game plan, but unfortunately I can’t see him until February 9th. Until then, I don’t know what I’m going to do with myself.

5 comments:

I hear you about the sitting thing, I usually sit/lay at my desk, and people comment that I look like a slacker, and I blame arthritis. That's half true, but really I'm just putting pressure on my lower back rather than my butt and vulva. So then I get a backache. Which leads to headaches. Arrghh.

The thing about the forums (both pudendal.info and tipna.org) is that the people who remain there are the ones who did not find relief from treatment, or who are putting off treatment. There are lots of people who do get well and who go on to live their lives as before.

All I can say is be careful about going to a doctor and saying "do something". Just as a hairdresser can only cut your hair shorter, a surgeon can only take away tissue. Make sure it's your best shot at getting well.

I left you my email address in another comment but I removed the punctuation so as not to get spammed. Hang in there.

Hi. I am so sorry for your frustration. I am completely healed from Vulvadynia. I changed my lifestyle and diet. I didn't use any drugs. For me it was a PH imbalance. I was too acidic. Acidic can collect in the tissues of the vulvar and affect the nerve. That is my theory. I have no scientific proof. I have a website. If you put vulvadynia solution in google you can find it. I don't sell anything. I am just trying to help other women. No doctor could help me and the drugs made it worse. Physical therapy didn't help either, although it can relieve some pain because of increased blood flow. I hope you still read your messages. The date is kind of old. Good luck. Laura

I have PN and Vulvo. for 5 years from chronic shingles down there, sucks. I am using a new supplement that is amazing and I am starting to get results, there is also an incredible business opportunity with it so I don't have to sit all day at a j.o.b. anymore. In the first 4 months I am making enough to pay my bills, SO great! watch this;www.abchealthreport.com and contact lifevantage for more info. This really is totally unique it even has it's own classification as a "neutrigenomic", and the company is very generous.